Undiagnosed for nearly 4 years, need some quality of life back!

@sandy1234 - It seems so frustrating dealing with NHS.
My daughter lives in Sweden and gets the same lack of interest from the medical community.
You mentioned findings on a recent pillcam - healing ulcers and lymphangiectasia. Those are important findings for once.
The doctor can not just “ think” that it’s not causing problems, it has to be proven. Also, why have you had ulcers?
You need to see a top GI doctor to review all of your records. I’m pretty sure that you should be able to have that happen. Is there a patient service office at NHS where you can request that? All of your records should be included.
Another question- you are young and have been bed bound for 4 years- who is supporting you? Do you get government stipends? I would think that you would have to have a real diagnosis to collect government aid?

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Well this was myself and my parents initial thoughts when the results of the pilcam came back through the post. I wasn't given a consultation so had no doctor to speak to about the results, but looking at the ulcers and lymphangiectasia we assumed this was important. However, after complaining to get further investigation, a letter was sent stating that it's a common finding and wouldn't be causing my symptoms and needed no further investigation.
What I don't understand also is that when I had a barium meal and an ultrasound, which was probably 2 years prior to the pilcam, the lymphangiectasia didn't show up on those?
As far as support, I still live with my parents and they support and care for me. It's literally tearing my whole family apart seeing me so ill, but we're getting no further towards getting a diagnosis. Also, yes, I have been turned down for disability benefits multiple times over the years, as I don't have a diagnosis.

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Sorry you are going through this Sandy1234,

You may want to do a bit of research on Mast Cell disorders. They can affect any system but mostly gastrointestinal, skin, parasympathetic, etc.

Another thing that gets overlooked a lot is Small Intestinal Bacterial Overgrowth. It isn’t tested for a lot and can have a whole host of symptoms.

Unfortunately many doctors are not well versed in rare conditions like Mast Cell Activation Syndrome so it can be tough to get diagnosed and it sounds like you may be without good healthcare coverage at the moment. Unfortunately, due to COVID, there are many more patients out there that may have mast cell disorders that cause multi-inflammatory conditions. Cytokine storms which are a mast cell degranulation situation has been found in those with COVID so more and more doctors are learning about this. There are some relatively safe over the counter treatments like H1 and H2 antihistamines that can help if your doctor were to suspect MCAS. I have also used a lot of steroids over the years which have helped tremendously but also come with risk. Definitely consult a doctor about possibility of MCAS. Testing for it is not easy either, but favorable response to treatment is part of the diagnostic criteria for having it.

Keeping a food diary and list of triggers is very helpful, if you haven’t already.

Again, no doctor here, but I have similar issues like you described and my journey down the rabbit hole started 20 years ago while I was in my 20’s and it has been a tough road. Took me about 20 years and multiple diagnosis to find the right treatments. Doctors threw around lupus, vasculitis, connective tissues disorders, some kind of autoimmune disease, etc. It is frustrating when you don’t know for sure what it is, because you don’t know what to treat it with. It can take persistence to keep going and advocating when you don’t feel heard. You know your body. I hope you can find a doctor that will listen, have compassion, and search for answers.

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Just had a look at the results again, it says healing raised prepyloric erosions, not sure if that's the same as an ulcer or not?

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Thanks so much for the reply. I can't believe it's taken you 20 years to get a diagnosis, that must've been terrible! When you're well you just assume that if you ever fall ill you'll be given a diagnosis and treated, but this really doesn't seem to be the case for so many people. I've looked as mast cell activation before as a lot of the symptoms do fit, and tried benadryl for a while, but when I got a referral to a rhumatologist as I suggested the possibility of ehlers danlos at the time, I just had the first consultation with them but they discharged me, saying that they didn't think it was anything autoimmune???? I guess it's just finding that right doctor, who's either seen something similar before, or who actually cares enough to refer you to the right people to get the help you need.
I did keep a food diary for a long time, but didn't notice anything to do with what I ate, though it might be worth doing again at this stage.

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My wife has Alzheimer's and has suffered with stomach issues such as discomfort, pain and nausea for over two years. She has had an upper GI, colonoscopy,MRI, CT and blood tests. All have come back negative. She has seen two Gastroenterologist over the years and just lately she was told that he was out of ideas.
Her stomach issues are compounded by her Alzheimer's disease and I am at a loss as to where to go for help.

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